Hi Bill! Thanks for taking news. Well, T is now fluctuating during the day. Pretty much boring at wake up, quite gone in the evening or sooner. I would give it a mean of 2 over 10, from 0 to 4 under stressful conditions/lack of sleep/hangover.
Would you say that you had mostly habituated? Or do you still get a strong emotional reaction when it is at 3 or 4? Also, do you remember how it was when you were at around the 2-year mark? Had it also been between 0 and 4 back then? Thanks!
Unfortunately I don't get the habituation concept. When T is at 4 (less and less however, and a hummm) I feel physical pain, so my tolerance has not decreased: migraine/eye pain/head skin pain/tiny muscle pain behind the ear hard as wood and rolling under my finger, on my T side, the left one, so I can compare with my healthy right ear. Year 2 and 3 I was on Trobalt 200mg a day (6 to 8 hissing year 1).
It is absolutely shocking that the doctors can't help you with the pain and a muscle that gets spasms!!! I mean, they tell us that T is due to brain neurons, and it is difficult to do anything about the brain. But things like a muscle experiencing a spasm?! Sometimes it feels like we are living in the 19th century...
Unless it was Trobalt that caused your T to fall from a min of 6 to a max of 4, hopefully your T will continue to fade (albeit incredibly slowly). Are you noticing/being bothered by T when it is at 1 or 2? I am glad that at least your T hasn't spread to the other ear. For many people (myself included) it spreads to the other ear at around month 9 after the onset...
T is apparently not just a sound. My ENT tried Lidocaïne local infusion whitout success.No one can explain so far. I learned not to complain (Typical answer: "some kids die from cancer you know it's far worse than your condition bla bla"). So paracetamol/diclofenac ointment/massage... One day I'll cut it with a blade !
It did spread on the other ear the first 2 months, but much lower and sounding like a fridge compressor. And gone. The first Trobalt intake acted like a T "succion" which made it instantly disappear. Afterwhile, the side effects were really scarring, and I became tolerant: Trobalt then made me so high I could forget T.
I'm still under anti-epilepsy drug : lamotrigine which is a mood moderator and anti-depressant. I'm keeping busy, making sports, listening to Metal (at a very very reasonable level: high frequency guitars relieve me), and sometimes, I can even make a nap (with T coming back afterwhile).
Cancer patients put in less intense suffering (compared to a person with debilitating T) for a shorter time.
I seem to remember that doctors Do treat some muscle cramping by cutting it. I am having trouble remember what muscle it was. You should see a surgeon who specializes in surgeries in that region and ask him or her whether cutting that muscle is a possibility...
For a time at the beginning I have said I would prefer cancer or leg amputation over T. Even a gun could have made the job. It was time to shut it up. It seems to be the muscles which make your ear moving (I can do it, funny for kids), I know suturing. Plus my daughter is at med school. My ear drum is healthy, I'm still scuba-diving, so... ENT surgeons, MD, don't give a shit. Some neurologists do.
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